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Intermediate Oncotype score: Did you choose chemo?

Posted by brighterdays @brighterdays, Mar 28, 2023

Hello! I’m 47. At the beginning of the year I was diagnosed with IDC and had a lumpectomy. Tumor was 14mm, grade 3, ki67 was 40%. Stage 1A, 0 nodes. I got my Oncotype result back yesterday and it was 16. My oncologist immediately said I needed chemo even though I’m in the low intermediate range. She wants to put me on taxotere and Cytoxan every 3 weeks for 4 times.
Has anyone had a similar experience where your oncologist strongly pushed for chemo with an intermediate Oncotype score? If you’ve had those drugs administered for chemo, how did you handle it? Thank you.

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brighterdays | @brighterdays | Mar 29, 2023

Wondering if I can get some insight. I’m sort of stuck on whether or not to get chemo. I’m right in the middle, so either way goes. Just wondering if anyone’s been in this situation and what helped to guide you in your decision. Just looking for different perspectives more on a human side rather than looking at all those numbers. Thank you.

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4 replies
bpknitter53 | @bpknitter53 | Mar 30, 2023
In reply to @brighterdays "Wondering if I can get some insight. I’m sort of stuck on whether or not to..." + (show)
@brighterdays

Wondering if I can get some insight. I’m sort of stuck on whether or not to get chemo. I’m right in the middle, so either way goes. Just wondering if anyone’s been in this situation and what helped to guide you in your decision. Just looking for different perspectives more on a human side rather than looking at all those numbers. Thank you.

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I have 3 new grandbabies and I plan to stick around at least long enough to see them graduate high school. I have many things to look forward to that I want to see and do and if I loose my hair from chemo (which I did) I figured it was a small price to pay now to have that chance. Also I have longevity on my side from both parents - father deceased (2021) at 96 and my mother is now 96 and going strong (she also lives alone). My dad had colon cancer dx when he was 60 and lived a long life after -- well so can I.

I looked at all the pluses of what I could see and do after I get through what is required for me to be on the other side of these treatments. I have a list of things I want to do and after chemo ended and hair started growing back - I'm working on doing those things. Some are simple things like spending more time trying different recipes - even ones I might like but I know my husband won't eat - oh well - more for me.

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Mar 30, 2023
In reply to @brighterdays "Wondering if I can get some insight. I’m sort of stuck on whether or not to..." + (show)
@brighterdays

Wondering if I can get some insight. I’m sort of stuck on whether or not to get chemo. I’m right in the middle, so either way goes. Just wondering if anyone’s been in this situation and what helped to guide you in your decision. Just looking for different perspectives more on a human side rather than looking at all those numbers. Thank you.

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I am looking back and thinking I am not sorry I took chemo. Imagine if I had refused it and then relapsed. I would have beaten myself up every day. I won’t say it was easy, but the 19 years I have had have been worth it. That is not perfect years but pretty great years. With my husband, and my family, and riding horses, and lunch with the girls, and………………
For me the answer to this question was peace of mind. But I gained so much more. 💕I always like to ask who are you taking treatments for, or what are you taking treatments for?

REPLY
bpknitter53 | @bpknitter53 | Mar 31, 2023
In reply to @brighterdays "Wondering if I can get some insight. I’m sort of stuck on whether or not to..." + (show)
@brighterdays

Wondering if I can get some insight. I’m sort of stuck on whether or not to get chemo. I’m right in the middle, so either way goes. Just wondering if anyone’s been in this situation and what helped to guide you in your decision. Just looking for different perspectives more on a human side rather than looking at all those numbers. Thank you.

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I looked at what I would gain by experiencing the hopefully short term discomfort - and the goal at the end far out weighed what I'd endure short-term. I'm not at the end of my treatments but I think my focus on the goal and my ability to keep a positive outlook have helped me endure this journey.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Apr 1, 2023
In reply to @brighterdays "Wondering if I can get some insight. I’m sort of stuck on whether or not to..." + (show)
@brighterdays

Wondering if I can get some insight. I’m sort of stuck on whether or not to get chemo. I’m right in the middle, so either way goes. Just wondering if anyone’s been in this situation and what helped to guide you in your decision. Just looking for different perspectives more on a human side rather than looking at all those numbers. Thank you.

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I was 48 with 3 young children. In my mind there was never any doubt- not fun exactly like Chris pointed out.
I have not had any relapse 30 years later.

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tinksmom | @tinksmom | Apr 9, 2023

Your age, ( young), pre-menopausal , plus a Ki 67 of 40% (that's really high) and Grade 3 (aggressive growth) would lead me towards taking the chemo for sure. The good news is that as your tumor is Grade 3 and grows quickly there will be lots of cell turnover and it will get smacked down hard by the chemo. Get as much information as you can and then make the decision you can live with. Good luck. ( When I was diagnosed last year, I was told I didn't need chemo, as my tumor was slow growing and chemo didn't work well on it. Now 6 months later my tumor has grown massively (10cm) yes 10, cm (100mm), the endocrine therapy is not working, and they are now starting me on chemo next week. Good luck.

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1 reply
resort | @resort | Apr 10, 2023
In reply to @tinksmom "Your age, ( young), pre-menopausal , plus a Ki 67 of 40% (that's really high) and..." + (show)
@tinksmom

Your age, ( young), pre-menopausal , plus a Ki 67 of 40% (that's really high) and Grade 3 (aggressive growth) would lead me towards taking the chemo for sure. The good news is that as your tumor is Grade 3 and grows quickly there will be lots of cell turnover and it will get smacked down hard by the chemo. Get as much information as you can and then make the decision you can live with. Good luck. ( When I was diagnosed last year, I was told I didn't need chemo, as my tumor was slow growing and chemo didn't work well on it. Now 6 months later my tumor has grown massively (10cm) yes 10, cm (100mm), the endocrine therapy is not working, and they are now starting me on chemo next week. Good luck.

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Good luck to you too! Lots of hugs!

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eb28 | @eb28 | Jan 27 3:56pm
In reply to @yt1978 "I had stage 1A and an intermediate onco score and no chemo but did have a..." + (show)
@yt1978

I had stage 1A and an intermediate onco score and no chemo but did have a mastectomy (not sure if that matters) I was also only 32 at the time so recommendation from surgeon and two oncologists was no chemo just tamoxifen. Took that for 10 years and I’m ok. Maybe get a second opinion?

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I am really interested in these posts. I just got my oncotype back and it was 17 so intermediate and I am 42. I was actually really disappointed. My oncologist is adamant chemo isn't necessary. I am starting on radiotherapy and having Tamoxifen. However I had heard about ovarian suppression as well and she said we would discuss this when I see what side effects I have with Tamoxifen.

I feel very uneasy about not having the chemo when there is a small benefit. I am also getting myself very concerned about ovarian suppression ( I had no idea this was a possibility for me ) Does anyone have any experience of this or thoughts the intermediate oncotype

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1 reply
yt1978 | @yt1978 | Jan 27 9:35pm

Hi I had the same and was told chemo would do more harm than good. I think that has been revalidated recently so I’m sure your oncologist is giving the best recommendation.

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lifetraveler | @lifetraveler | Jan 29 9:00am
In reply to @jbp "I had a oncotype score of 36 and was put on those drugs when I was..." + (show)
@jbp

I had a oncotype score of 36 and was put on those drugs when I was in my mid - 50s. I tolerated the treatment very well. I was teaching high school at the time and the only days I didn't work were the days of the actual infusions. I'm 67 now and had a recurrence of my cancer 1 year ago. I strongly feel the aggressive action my Dr. suggested gave me at least 10 extra years with no recurrence of the cancer.

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Dear Jbp@jbp:

Sorry to learn about the recurrence of the BC:(

I admire your positive thinking attitude and courage to share your experience with us! I am wondering whether the recurrence' happening on the same side or the other? Since you had done all you'd been offered - chemo, radiation treatments and years of AIs...

Thanks again for sharing your personal experience to guide us! Wishing you well and healthy, happily striving forward on the journey ahead!

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